Despite being first identified in medical literature in the 1940s and impacting 5-12% of women annually, medical professionals rarely diagnose Lipedema due to the lack of training and awareness to recognize the disease.
Nurses have the most face time with patients, so nurses must understand what Lipedema is and how to recognize the signs.
We spoke with Ana Pozzoli, PT, CLT, National Lymphedema Network expert clinician, about how nurses can play a pivotal role in helping women receive care and treatment for Lipedema. What follows is our interview, edited for length and clarity.
What is Lipedema?
Lipedema is a chronic medical condition involving loose connective tissue. Lipedema is characterized by symmetric enlargement of the legs due to deposits of fat beneath the skin. It is predominantly diagnosed in women. The cause of Lipedema is unknown; however, there is evidence of hormonal and hereditary influences. It is identified by increased nodular and fibrotic adipose tissue in the gynoid areas, the buttocks, hips, thighs, lower abdomen, and limbs. Many believe these changes start at different hormonal stages in a female’s life, such as puberty, pregnancy, pre-menopause, and menopause. It is a common condition but underrecognized. The hallmark of Lipedema is tissue inflammation. This often painful medical condition usually worsens gradually. Few physicians recognize the constellation of signs and symptoms to diagnose it properly.
How many people suffer from this condition? Are they generally women?
Though comprehensive epidemiology data is lacking, Lipedema impacts 5-12% of women.
What is the prognosis for women with lipedema?
With a Lipedema diagnosis, it is believed the different hormonal stages of a female’s life can worsen the condition. It is a gradual worsening of the adiposity in the legs, though some individuals develop Lipedema that stabilizes. In the early stages of Lipedema, most females have a normal appearance above their waist. The upper extremities, chest, torso, and abdomen can also enlarge. Physicians underrecognize it; if left untreated, it can progress, causing mobility and disability issues.
Why is it rarely diagnosed or misdiagnosed?
Lipedema was first diagnosed in the 1940s at the Mayo Clinic by Allen and Hines. The pathophysiology of Lipedema needs to be better understood and routinely included in medical school curricula. There is currently no specific test to identify Lipedema. Imaging studies like ultrasound, MRI, lymphoscintigraphy, and lymphangiogram may be helpful, although test results may appear normal in the earlier stages.
The medical community often confuses lipedema with obesity and lymphedema. Other similar disorders are Lipohypertrophy (no pain and edema), Chronic venous insufficiency, and other idiopathic edemas. Misdiagnosis in patients with Lipedema is concerning, as it can delay appropriate management of the condition and allow the progression of the condition.
What are the physical signs and symptoms and genetic markers for diagnosing Lipedema?
Lipedema signs and symptoms vary from person to person, including abnormal adiposity in both legs, extending from buttocks to ankles. These may include the tendency to bruise easily, pain sensation in the legs, having knee (Genu) valgus, smaller waist in relation to the hips, hypermobility of the joints, pes planus, cuff sign at the ankles, and is generally resistant to dietary and exercise interventions. General fatigue and physical impairment are often observed. There is swelling with symmetrical enlargement of the lower limbs due to abnormal adiposity. Some manifestations to watch for may indicate weight loss has been non-respondent to exercise; elevation does not tend to help; absent or minor pitting edema; vascular fragility; tenderness in the affected areas; and negative stemmer signs.
What are the treatment options available for Lipedema?
There is no one effective treatment approach for treating Lipedema. Management to prevent progression and alleviate symptoms is the therapy goal. Current guidelines recommend conservative therapies such as specialized compression garments and manual lymphatic drainage (MLD).
- Manual lymphatic drainage targets the extra fluid retention of the extremities in the later stages. It also helps with reducing pain sensation.
- Compression therapy helps support the tissue and prevent increased fluid retention. The compression is selected according to the lipedema type and location in the body. It can be in leggings, Bolero for arms, Knee Highs, capri, and shorts. Flat knit or micro-massage materials tend to support the tender tissue where the adiposity is present. Circular knit garments tend to bind on the tissue and create more discomfort. In the later stages, bandaging may be applicable in their treatments. Each patient needs to be assessed individually for garment selection. A pneumatic compression device(pump) can be beneficial in self-management.
- Exercises should also be individual to the patient’s needs. The focus should be on posture, strength, mobility, balance, joint hypermobility, and gait. Some tools that are implemented are aqua therapy, vibration plates, and exercise equipment. Some of the techniques used as exercise can range from yoga, tai chi, swimming, and Pilates. Exercise should not be aggressive because it may cause the body to produce inflammatory hormones during performance of, such as cortisol.
- Skin care is critical at all stages of lipedema. Many patients consider dry brushing and moisturizing the skin as essential. The best way to care for the skin is to hydrate from within. Drinking water is vital.
- Nutrition suggestions vary but can play a significant role in the inflammatory condition of Lipedema. Understanding the anti-inflammatory way of eating can be a part of self-management. Remember that the FDA does not test supplements, so there is no way to know possible side effects. Most diuretics do not help alleviate the swelling of Lipedema. Liposuction can be valuable for some people to manage pain and improve mobility. However, research is still evolving on the effectiveness of surgery. Surgeons have different approaches; there must be clear research to recommend one approach over another. We encourage you to research, and your decision should be made in partnership with a qualified medical professional.
How can Nurses communicate information about the disease with patients?
Nurses can be a liaison in the care of a Lipedema patient. Many times, nurses are the first practitioner to see the patient. By recognizing the signs and symptoms, a differential diagnosis may be made instead of labeling the patient as obese. Since nurses are in direct communication with the physicians or the specialist in the medical team, noticing and documenting the criteria that classify the patient as Lipedema will initiate a dialogue about the patient’s condition.
What general facts and advice should nurses know about lipedema to help their patients?
The fact is that Lipedema is an actual chronic condition of loose connective tissue. If the patient fits the criteria profile, the patient should not be diagnosed as obese based solely on BMI.
Another fact is that Lipedema predominantly affects women.
There is an actual asymmetrical body composition, a smaller trunk compared to the lower portion of the body. The feet and hands are usually spared.
Lipedema is progressive if left untreated, and is common but misdiagnosed and underrecognized. This condition carries psychological morbidity.
Look for signs and symptoms if you think the patient may display Lipedema. Be compassionate with the patient, and do not judge. Guide the patient to the proper resources, such as the Lipedema Foundation.
What role do nurses play in helping patients (women) receive care and treatment for this ailment?
Nurses play a critical role in showing an understanding of the signs and symptoms that are involved in the diagnosis of Lipedema.
Discuss with your patients that there is help for them to manage the condition’s progression.
Show compassion when the patient tells you they have tried many things and that nothing works for them.
In addition, nurses are also health care providers who can become certified lymphedema therapists by the many certification institutions.
What can nurses do to help patients with this condition?
Once Lipedema has been identified, reassure your patient that it’s not their fault that their body looks different.
Early recognition and functional limitations can enhance the ability of the patient to make lifestyle changes to improve the quality of life.
Guide the patients in the right direction with proper recommendations to the health care practitioners equipped to treat them.
Where can nurses go to become educated about lipedema?
- The Lipedema Foundation | Lipedemafoundation.org
- Fat Disorder Research Society | Fatdisorders.org
- Search the “Standard of care for Lipedema” In PubMed
- Amanda Oakley. Lipedema. DermNet NZ. 2008;http://dermnetnz.org/dermal-infiltrative/lipoedema.html(http:dermnetnz.org/dermal-infiltrative/lipoedema.html).
- Herbst KL, Kahn LA, Iker E, Ehrlich C, Wright T, McHutchison L, Schwartz J, Sleigh M, Donahue PM, Lisson KH, Faris T, Miller J, Lontok E, Schwartz MS, Dean SM, Bartholomew JR, Armour P, Correa-Perez M, Pennings N, Wallace EL, Larson E. Standard of care for lipedema in the United States. Phlebology. 2021 Dec;36(10):779-796. doi: 10.1177/02683555211015887. Epub 2021 May 28. PMID: 34049453; PMCID: PMC8652358.
- Bonetti G, Herbst KL, Dhuli K, Kiani AK, Michelini S, Michelini S, Ceccarini MR, Michelini S, Ricci M, Cestari M, Codini M, Beccari T, Bellinato F, Gisondi P, Bertelli M. Dietary supplements for lipedema. J Prev Med Hyg. 2022 Oct 17;63(2 Suppl 3):E169-E173. doi: 10.15167/2421-4248/jpmh2022.63.2S3.2758. PMID: 36479502; PMCID: PMC9710418.
- Okhovat JP, Alavi A. Lipedema: A Review of the Literature. Int J Low Extrem Wounds. 2015 Sep;14(3):262-7. doi: 10.1177/1534734614554284. Epub 2014 Oct 17. PMID: 25326446.
- Warren Peled A, Kappos EA. Lipedema: diagnostic and management challenges. Int J Womens Health. 2016 Aug 11;8:389-95. doi: 10.2147/IJWH.S106227. PMID: 27570465; PMCID: PMC4986968.